Porphyria Cutanea Tarda

Hi friends…today I had a follow-up radio interview to my previous interview that talked about Living with invisible diseases. Today the talk focused on how I was able to move forward from all that pain, and start getting back to the life I thought I was going to be living.

What is Blog Talk Radio anyway?

BlogTalkRadio is the online radio network that allows users to host live call-in talk shows with unlimited participants using our free podcast recording tool. No software to download or complicated audio equipment.

I would love for you to listen to this quick show! The Magic Happens “Share the Wealth” with Kellie Fitzgerald as hostess. The interview went so well again that Kellie has asked me to come back for an even longer talk next time because we both feel that living with invisible diseases does NOT need to be hidden in some dark, dusty corners and spoken of in whispers. No. We both understand the pain of inflammatory diseases and what that brings to the table when people think “You look well.” To be honest with you, I don’t remember what I said last time…but it was painful I know. Raw. Real. And me. Here it is: Older Blog Talk Radio Interview <<< so you can see the difference. If that one doesn’t work, I was also interviewed here. << By host Tonya Wilson.

Thank you for always being here with me! Namaste my friends.

Here is the link to 4 Weeks to Wellness. I appreciate those of you who have already signed up and are giving me such great feedback after listening to me this morning! You can leave a comment on this post if you would like! Also see the work with me tab at the top of the blog for more!

Share the Wealth with Kellie Fitzgerald and her guest…well me!

Hopefully you got a chance to listen to that ^^ as it was actually a really quick show!! Well, for me anyway. I glossed over most of the details, but I do want you to know that there is a search button here on the page and if my story resonates with you or you know anyone at all who suffers from any of the diseases I talk about, please feel free to share this post with them. Lastly, I am doing some more research on one more new gene mutation so look for that soon if you happen to like reading about invisible diseases and possible links as to why you might have what you have! ~Aimee

Spread awesomeness:

Like this:

Hey guys!! Most of you know my story in bits and pieces, but I recently tried to pull it together for a submission and guess what? It’s being posted tonight! Awakening People is the Facebook page, but here is the link below:

Spread awesomeness:

Like this:

How can I find more time in my life?

Today, your task is to start new habits. When you come from a place of pain, whether it’s fibromyalgia or other illnesses, as soon as you wake up, do not think about how hard the day is going to be. Do not think of your to-do list. Do not think of the tasks ahead which are so difficult to get through you dread them. No. Take a dry-erase pen, and write some daily affirmations on your bathroom mirror. Make that the first thing you see. I am healing. I am getting better.Whatever it is to get you moving in a good way. Repeat every morning until you believe them…so basically, as long as it takes.

Why do I need to make small improvements?

If you do the same thing every single day, consider something new to get you moving and thinking; don’t give me that eyeball. It’s time to start doing something different. I was reading an article called Can You Become a Creature of New Habits? This struck me as something I needed to do…”a Japanese technique called kaizen, which calls for tiny, continuous improvements.” M. J. Ryan, author of the 2006 book “This Year I Will…” states that “Whenever we initiate change, even a positive one, we activate fear in our emotional brain,” Ms. Ryan notes in her book. “If the fear is big enough, the fight-or-flight response will go off and we’ll run from what we’re trying to do. The small steps in kaizen don’t set off fight or flight, but rather keep us in the thinking brain, where we have access to our creativity and playfulness.”

Have your calendar where you can see your schedule.

Set your alarm for a minute earlier for the next 30 days…60 days…then 90 days. Wow! Look at that extra time.

Identify ways in which you waste time…not fun, I know. Because believe me, I work on social media so I can easily lose track of time. That’s why I need to do number 2^^^.

Have you ever reviewed your to-do list? I keep lists on the counter. Sometimes I get down to just a few things…that are still on there from erm 2 months ago. But when I finally mark them off, whew. I feel like I did something.

Make a list of things you think you have to do like social obligations. If there is something you are doing that is taking up your time and you can honestly say you get no joy from it, cut it out. I have done this.

So it’s time to initiate change. A positive one. Create a habit of excellence with tiny, continuous improvements. In other words, baby steps to a new you.

Spread awesomeness:

Like this:

Hey friends…you know how last week on the Facebook fan page for my blog, I asked you a question? I asked you to tell me what kind of “invisible disease” you had. Many times, we feel so alone with these diseases, because they are in fact, not visible to people looking in at our lives. But this statistic came from the link I posted: 96% of people with chronic medical conditions live with an illness that is invisible.

I don’t really think we are alone. So let’s say you didn’t get your disability and you have 5, maybe 6 illnesses on that list. Guess what? It happens. I decided it meant something different. I decided it meant that I was supposed to find a flexible job working from home and helping others. Don’t be discouraged. You have a few options. You can continue the fight without a lawyer. I have been told that’s why I never got anywhere. You can get a lawyer. Or you can move on. Moving on is not giving up. I just want to give you permission in case you needed to hear that. I know all the excuses in your head. I know all the what ifs. But do not stay in that place of despair. Make a plan. Work on it. Move on.

So now I am in yoga teacher training, and it’s hard. Very, very hard emotionally and physically. I doubt my path at times. I do. But as my friend said yesterday, okay really paraphrasing, if we didn’t have emotions or feelings we’d be like Data from Star Trek. He was an android who was unable to feel emotion or understand certain human responses. We don’t want to live like that. So acknowledge the feelings you are having, and work the plan. Whatever the plan is. If you don’t have plan, write something down. Just a few things. It can be as simple as get out of bed, and get dressed. Get to the store today. Fibro friends, this is an important plan. You know this. Get out of your pajamas…says the blogger still in pajamas. But you know what I’m talking about!!! You do.

Next on your list, make a new friend. Okay, this one is hard. Why is this hard? It is hard for people who feel alone, because opening ourselves up and getting vulnerable with new people is like going to a new doctor for us. We hate having to start at the beginning and tell our story. I know this. You know this. Stop ignoring this one. So here’s how you can go about doing this. Re-evaluate who is in your life right now. Who checks in on you…who checked out on you. Those people who checked out of your life during your hardest times, they have left you space for new people. I know it sucks, believe me I do. But it’s time to be honest. Those people didn’t understand anyway.

So start a new practice. Get your list out. What did you like to do before all the bumps? For me, I already liked yoga, so I looked into restorative, which was low-key. I researched other types of exercises for fibromyalgia, and decided I didn’t feel like going to water aerobics, but if you like that, put that down. if you liked gardening put it down. Don’t think about the pain, I know you automatically went to “I can’t get down there and bend.” Stop. So here’s a neat idea, look up community free classes or workshops in your area. You can also container garden and not have to bend. See how I did that? Put it at eye level. Flower arranging? Do it. Whatever it is that old you did, write it down.

So guess what’s going to happen during this process of thinking about other things that you now have room for in your life…you are going to make new friends. You are going to feel better, and you are going to feel less alone. Anytime you have a negative thought, push it away and back to the things you are doing that are positive. That are a step in the right direction. So when you get that letter in the mail from social security…don’t be afraid to open it. Make a plan.

Spread awesomeness:

Like this:

Hi friends, if you are new over here and want to read my story, you can use the side button to go all the way to some of my first posts. If you want to really “hear” my story, the recording of the Talk Radio Blog show is on the post before this one. It’s your choice. I know it sounds long, but I talk about invisible diseases as pertain to me, so it might be interesting to you. Lastly, I use a method of clean eating…no processed foods, no fast food, not white sugar, no flour, etc. And supplements to stay healthy. See the tab on the blog here called Vitalize You and it basically tells you just a few of the products I use. I opted not to be on Lyrica or Cymbalta due to my research.

The road to wellness…

Next up, I will be extremely busy with my new yoga teacher training classes and more to come on that I’m sure. I am using these methods instead of “traditional” and so far I have lost 18 pounds and gone down 3 sizes just from getting rid of the toxins that my body was reacting to with autoimmune. I have gotten rid of the bloat and the IBS symptoms I used to experience from food “attacking” me. I still have my bad days…as does everyone, but I am making progress.

I also have a tab at the top of this blog explaining how I work with clients…so feel free to read that as well as my “About me”.

Spread awesomeness:

Like this:

So this week has been interesting with the launch of The Wellness Universe website…being asked to write for all kinds of different pages. And getting a phone call that shall remain a mystery for now. But this, this is not going to be kept a secret…

Authoress Tonya Wilson of “The Time Is Now” sheds light Issues Of Addictions, Recovery & Deliverance. On Sunday, January 25, 2015 @ 7:00 PM EST. If You Need Inspiration, Answers, or Support, The Time Is Now! Her Guest Panelist This week is, AIMEE H….Aimee H. is a fighter of invisible diseases (namely her own). She is the Writer of the Blog “The Burned Hand”. She is also the Owner and Operator of Vitalize You. Both are now a part of The Wellness Universe Directory. Join us as she shares an all natural approach to wellness and recovery, The recorded playback is here blog talk radio.

I have connected with many people over the years and I feel most strongly connected to people with illness. But recovery can be many things to many people. It can be drugs, alcohol, pain killers, but it can also be recovery from internal conflicts. Depression, fertility issues, things people cannot see and in no way shape or form have the right to judge your path. So please take a moment to listen in if you have time. If not, I will probably come back and drop a link in this post later with the recording. We’ll see how I sound first. Wink. P.S. Ihaveneverdonethisbeforesodontbejudgingme

But I know you will be cheering me on!!

Spread awesomeness:

Like this:

Happy Blogiversary to us! Without you reading my posts, there wouldn’t be a blog. Ok, that’s not true, I would be lonely, but the truth is, I write for me as I’ve always said. It heals something deep down inside me that was broken the day I found out about my first diagnosis of an “invisible disease” named Porphyria. So without further ado, let’s go back there, shall we? Cue psychedelic swirly things. And poof! We are in 1997. That was the New Year’s Eve all the crazy decided it was time to come out. It started with tests coming back odd…and I thought my life was just beginning with my soon-to-be husband back then. Then I get told about the cervical dysplasia and I admit the word pre-cancerous cells is scary. It just is.

So as we move into 1998, the year does not get any better at that point. I find a man I am madly in love with and now I am falling apart…in more ways than one. That’s when the blisters started. Blisters. Are. Bad. These were not your ordinary ones mind you, well have a read over there at my link. I’ll wait. Humming music in my head. Okay, back on track. See I told you. They used LATIN words. Latin. On me. Who did they think they were dealing with?? I had a B.A. in English and was a researcher. Of course I was going to find out what they trying to hide. And it wasn’t going to be good…but I already knew the that the second she whispered to the other doctor.

Anyway, I consoled myself back then with the fact that out of all the porphyrias, mine seemed to be the less likely to cause internal pain. I didn’t think about the psychological at the time. The fact that I was such a strong person and this was slowly killing me inside. But, I had a wedding to plan so let’s get to the rest of 1998, and how it lingered on. You will want to read that link over there again. I’ll wait for you to catch up because that one includes everyone’s favorite subject. Vampire lore (hint, I do not sparkle, but yes, the burning part is real). I have been told I am ageless. There is some truth to that part of the myth as well. I do get my blood taken for life. But I would not wish this on even the most fervent Twilight fan. P.S. that vamp is dumb. My man Damon Salvatore is much better…in fact any vampire is better than Mr. Sparkle. Just my opinion.

Okay, back to me getting married at this point in my life with pints of blood taken every week, no sunlight, no birth control, no alcohol, and blisters still present. Did I mention my skin burned? Burned all over, but especially my hands. Ding, ding ding! See how I came up with the quote title?? It made perfect sense. Love of literature combined with the horrible stuff going on in my body. Poof. Perfect title. So let’s finish up remembering why I started this blog by reading this post the Summer of 1998. And this my friends, is why I need to finish my book. I believe my story can and does help others feel less alone in this world. And this was just the beginning.

Spread awesomeness:

Like this:

Breathe in. Focus on your breath. Breathe out. Whooosh. What am I doing? Oh hi there. Nothing. People are trying to make me cry and stuff…but like that man in Cloudy with a Chance of Meatballs 2, I am holding it back. Please tell me you clicked on that link. It’s funny. Shhh. Kids movies are funny…plus I don’t see erm adult movies anymore. Back to the point of this post.

I am counting the good days, the good things that happen, and the good people in my life. I am ignoring the bad right now because it’s something I need to do for myself. It is one of my coping mechanisms when I am having a hard time. Somehow, God, the universe and good people know when I am having a hard time. Ok, so I tell God things all the time, but it’s kind of like telling your teacher…maybe even tattling on yourself. You can’t help but think God, are you listening to me? Am I in time-out now? Or maybe He’s like “Aimee, calm down. I am trying to take of the other 1,000,000 people who need me right now. Just chill.” So here I am chilling. Occasionally going God, pick me! Pick me! It’s my turn!!! I am being patient. Well, that’s when He sends in my friends. My support system. People who are there to help.

Knowing that I have a “life sentence” of dealing with the ups and downs of invisible diseases, well, I am not going to lie, I do have “woe is me” days and I hate those days. So I work extra hard to focus on others on those days. I built my fan page around picking up people like me. So imagine my surprise when I woke up one morning, way after all you other nice people have gone to work, and found a note on my wall that I was one of 22 most inspirational pages for my friend Sheila. Well, I was shocked. Look for yourself…I am actually there. Have a peek. Really. It’s still there. I thought maybe it was going to go away like magic, but it’s still there!! 22 Most Inspiring Facebook Pages. Ta-dahhhhhh.

A sense of “you must be doing something right” came over me. Then this contest jumped up in my face here on Best Health Blogs 2014. And I thought why not me too? I got a later start than everyone else who knew about the contest, but it can’t hurt. I technically need a mere 1000 votes to catch up, but it’s for $1,000 and I would definitely put that money to good use as I am paying off dachshund bills, backed up sink, and erm things that were ruined in my attic like my brand-new Christmas tree, but who’s counting? I’m not. Oh and that burning smell in my mini-van that I continue to pray to God will keep working…so we dump more oil in and keep on going (P.S. it’s got some sort of oil leak…but it’s fine). So these things I do not focus on. I don’t. I do that thing that children do when they can’t hear you…I cover my ears and go lalalalalala. Ignore. Can’t deal with you right now.

And guess what? It works for me because I can focus on the good. When I tell you the “bad” and you understand that someone out there gets it, not just kinda gets it, but really and truly could look you in the eye and say “I have been where you are, I might still be there, but it’s getting better day by day.” And you realize that you are not always going to be wherever “there” is. That it might be bad at this moment. It might. But stop, breathe in and out and find the good in your life. It’s there. Trust me sisters and brothers, it’s there. Oh and note to self, God hasn’t stop listening. He hears you. He is making way right now for some amazing things to come into your life. So put on your cape, and start focusing on the good. You can do this.

Spread awesomeness:

Like this:

Practicing Trancendental Meditation is said to be a good way to relieve stress. The TM technique involves the use of a sound or mantra and is practiced for 15–20 minutes twice per day. For example, let’s say you are dealing with people who just don’t get “it”. Whatever it is. You can close your eyes while speaking to them and begin your meditation. I had to do this today when speaking with someone who deals with medical things. I had to explain that genetic conditions such as mine do not have magical “cures”…that basically that’s why the gene was inherited. If it did have a cure, I think I’d know about it by now as I would love to stop having pints of my blood taken every 6 months. So, in order to deal with this yet again, I had to go to my happy place. My place where my mantra was “Don’t slap the stupid people. Ohmmmmm. They can’t help it. Ohmmmmmm. They don’t know any better. Ohmmmm.” Repeat.

I have had to go to this place often in the last 17 years. When I then had to call the next doctor’s office to schedule my phlebotomy, the nurse said they needed to do more blood work. I said, no actually, you don’t. I just had blood work done, and the doctor told me if I was experiencing problems to call back and make a phlebotomy appointment. So, here I am experiencing “problems”, calling you to get things straight. Well, this went on for a while because she insisted he said I had to have more blood work done before I could have my pint taken. I calmly explained that it appeared I was breaking out in porphyria bumps and that most people with hereditary hemochromatosis don’t have the two fold warning system like I do to let them know it is time for the vampire visit.

By the time I was done with this, I had worked myself up again. I called my husband and my mom to vent because it’s either that or throw things…or cry. Which gets me absolutely no where. Then I am reminded of other people who are worse off and I feel bad about getting upset, but it can’t be helped. I thought back to my earlier conversation with a lady I just met. Her daughter has one of my conditions, fibromyalgia, and can’t work, get out of bed some days or drive a car. I am one of those people who really tries to think of other people when I feel bad. I really do. It makes me want to push harder to show these people that life can be lived. There is hope. There is a way out of this, and we just have to believe. Sometimes, we are going to have to put up with the “stupid” things in our lives. Whatever that is. Irritants, things that challenge us. Make us feel frustrated, mad, or ready to throw in the towel. Push past that to the other side. You can do it.

Spread awesomeness:

Like this:

Posts navigation

NEW Head|Heart|Health Club

Join us in our exclusive group where a healthy mindset is our goal. >>> Head. Stop the cycle of unwanted thoughts. Heart. Connect with your inner most desires, wishes and dreams. Health. Learn how to take control of your wellness.<<< Are you longing for more freedom to be you? Would you like a change in who you are surrounding yourself with? Would you like the confidence to be who you really are with just a little help? Come join us under the Head|Heart|Health Club tab.